After 11 years in development, the World Health Organization (WHO) released an advance “preview” version of ICD-11 in June 2018 to enable member states and other stakeholders to evaluate the new edition and start the process of planning for potential adoption and implementation.

In May, this year, the WHO intends to present the ICD-11 MMS for endorsement at the 72nd World Health Assembly (Geneva, May 22–28, 2019).

If endorsed, the WHA’s endorsement would not take effect until January 2022. After this date, member states can begin using the new edition for reporting. It is anticipated that early implementers will take several years to prepare their countries for transition from ICD-10 to ICD-11.

Delaying the effective endorsement date to January 2022 also allows the WHO additional time for review and revision of implementation and end-user support materials, for preparation of ICD-11’s specialty versions and derivative publications, and to clear a backlog of unprocessed proposals.

England’s NHS Digital has yet to publish a timeline for evaluation and potential implementation of ICD-11.

The World Health Organization’s International Classification of Diseases, Tenth Revision (ICD-10) is used to standardise the way we report causes of death across the world. Australia uses ICD-10 for coding mortality (cause of death) and ICD-10-AM for coding of diseases and related health problems in hospitals (morbidity). The WHO’s Eleventh Revision of ICD (ICD-11) brings the reporting of mortality and morbidity into one classification.

Countries have been given a version of ICD-11 to start looking at how it might be implemented for reporting. The WHO anticipates that ICD-11 will be presented to the World Health Assembly (the decision-making group of WHO) in May 2019 which will pave the way for countries to begin the adoption of ICD-11.

ICD-11 Review for Australia

The Australian Institute of Health and Welfare (AIHW) is conducting a review of ICD-11 to inform and assist decision-makers about ICD-11 and its potential for adoption in Australia.

The AIHW is designated as the Australian Collaborating Centre (ACC) for the WHO’s Family of International Classifications. The membership of the ACC is Australian and New Zealand organisations that have an interest and experience in working with health classifications. The work of the ACC has contributed to the development of ICD-11.

Contribute to the Review

If you have comments about the potential adoption of ICD-11 in Australia please contact the AIHW project team: Email: who-fic-acc@aihw.gov.au

ICD-11 was released by the WHO in an advanced ‘preview’ version in June 2018 and is expected to be formally presented to the Seventy-second World Health Assembly in May 2019 for official endorsement by Member States.

If endorsed, ICD-11 will then be available for implementation by Member States and there is an expectation by the WHO that its Member States will take steps to begin using ICD-11 in some capacity, whether that be exclusively for mortality purposes or for more broader application in morbidity systems and beyond.

The Australian Institute of Health and Welfare (AIHW) is conducting a review of ICD-11 to inform and assist decision-makers about ICD-11 and its potential for adoption in Australia.

The aim of stakeholder consultation is to identify all issues relevant to a potential adoption of ICD-11 so that, if and when, Australia decides to adopt ICD-11 it can start to ready its relevant systems, processes and people for implementation in some capacity.

A decision to adopt and implement ICD-11 would require a detailed understanding of the stakeholders impacted, the resources needed, the time frames required, and the impact on existing workforces.

The WHO has ceased to update ICD-10 and this will, over time, result in ICD-10 and ICD-10-AM becoming out of date. However, a decision to adopt ICD-11 for use in Australia has not yet been made. A lot of research and consultation will need to be undertaken before such a decision could be made and this may take several years. In addition, it is anticipated that several years lead time will be required for implementation of ICD-11 once a decision is made to implement.

(Key links from this post are also available on the ICD-11 2018 tab page.)

After 11 years in development and four extensions to the timeline, the World Health Organization (WHO) finally released a version of ICD-11 on June 18th.

Advanced preview

The WHO is presenting this June release as an “advance preview” to enable countries to start planning for implementation, prepare national translations and begin training health professionals.

ICD-11 MMS is scheduled for presentation at the World Health Assembly (WHA) in May 2019 for adoption by member states, but WHA endorsement won’t come into effect until January 1, 2022. After that date, member states can begin using the new edition for data reporting — if they are ready.

The WHO has bought itself a further three and half years in which to complete the preparation of implementation and support materials and finalize companion publications and other derivatives.

Dr Christopher Chute, chair of ICD-11’s Medical and Scientific Advisory Committee (MSAC), predicts that early implementers may require around five years to prepare their countries’ health systems for transition. Member states using a “clinical modification” of ICD are likely to take longer to develop, test and roll out a country specific adaptation.

There is no mandatory implementation date — member states will migrate to ICD-11 at their own pace and according to their countries’ specific timelines, requirements and resources.

Global adoption will likely be a patchy and prolonged process and for a period of time, WHO will be accepting data recorded using both ICD-10 and the new ICD-11 code sets.

No countries have announced implementation schedules. NHS Digital says:

“…No decision has been made for the implementation of ICD-11 in England, however NHS Digital plan to undertake further testing of the latest release and supporting products that will inform a future decision.”

In the meantime, the mandatory classification and terminology systems for use in the NHS are ICD-10* and SNOMED CT UK Edition**.

*NHS currently mandating ICD-10 Version: 2015.

**Read Codes (CTV-2 and CTV-3) are retired. SNOMED CT became the mandatory terminology system for use in NHS primary care in April 2018. Secondary Care, Acute Care, Mental Health, Community systems, Dentistry and other systems used in the direct management of care of an individual are scheduled to adopt SNOMED CT as the mandatory clinical terminology before 1 April 2020.

ICD-11 Beta Draft becomes ICD-11 Maintenance Platform

The orange ICD-11 Beta drafting platform is renamed to the “ICD-11 Maintenance Platform” and will remain in the public domain as a “work in progress” between stable releases.

The content on the orange platform will change as the substantial backlog of earlier proposals and new proposals submitted since the June 2018 release are processed.

An approved proposal for an addition or other change won’t immediately be reflected in the released version of the ICD-11 MMS but carried forward for eventual incorporation into a later release, according to the update cycle for that particular class of change.

There is a current backlog of over 1000 proposals waiting to be processed. New comments and proposals will continue to be accepted (see Annex 3.7 of the Reference Guide for maintenance and update schedules and guidance on submitting new proposals).

(If you were registered with the Beta drafting platform for access to the Comments function and Proposals Mechanism your account will work for the Maintenance Platform and you will be able to access historical comments and proposals.)

The maintenance and update of ICD-11 will be advised by the Classifications and Statistics Advisory Commitee (CSAC); the Medical and Scientific Advisory Committee (MSAC); the Mortality Reference Group; the Morbidity Reference Group; and the Functioning and Disability Reference Group.

It is currently unclear in which year the first update cycle is anticipated to start, i.e., whether the next stable version would be released in January 2020, or in a later year.

The ICD Revision Topic Advisory Groups and sub working groups ceased operations in October 2016 and the Joint Task Force is expected to be stood down later this year.

The ICD-11 Maintenance Platform displays both the Foundation Component and the combined Mortality and Morbidity Statistics linearization:

This platform currently displays only the MMS Linearization codes, not the Foundation Component which contains all the ICD entities. As released in June 2018, the content is planned to remain stable until January 2019, in preparation for presentation at the May 2019 World Health Assembly.

(At the time of publication, there is no PDF version of the Reference Guide only an html version.)

What hasn’t been released yet?

Not all disorder “Descriptions” texts and other “Content Model” parameters have been populated and the full ICD-11 implementation package isn’t completed.

An updated ICD Revision information page states: “A suite of tools and functionality facilitate implementation and use of ICD-11.” But not all the tools and other materials listed under the Implementation Support tab are currently available.

The list also mentions “Specialty versions” but none of these are available; for example, the ICD-11 Clinical descriptions and diagnostic guidelines for Mental and Behavioural Disorders (the equivalent to ICD-10’s “Blue Book”) hasn’t been released yet.

Practitioners who have signed up to the Global Clinical Practice Network have had the opportunity to review and comment on drafts of the full clinical description and diagnostic guideline texts but drafts have not been available for public stakeholder review.

It’s not known whether this specialty mental disorder publication is planned to be released later this year or if the content cannot be finalized until after the ICD-11 MMS code sets have been ratified, in May 2019.

ICD-11 PHC: the revision of the 1996 publication: Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 Chapter V Primary Care Version (aka “ICD-10 PHC”) has not been released, either.

Drafts of the full texts for the disorder descriptions, as currently proposed for the 27 mental disorders for inclusion in ICD-11 PHC, are not available for public stakeholder scrutiny. There is no publicly available timeline for the finalization and release of ICD-11 PHC nor is it clear whether any additional field trials are in progress or have been recommended. NB: This publication will not be mandatory for use by WHO member states and it does not override the ICD-10 and ICD-11 code sets.

Presentation Slides: ICD 11th revision, Member State Information Session Geneva, May 14, 2018, Dr John Grove, Director, Department of Information, Evidence, and Research, WHO and Dr Robert Jakob, Team Lead, Classifications, Terminologies and Standards, WHO https://dxrevisionwatch.files.wordpress.com/2018/05/icd11.pdf

Audio file from WHO Press Conference: June 14, 2018, Release of ICD-11 – the 11th revision of the International Classification of Disease, Dr Shekhar Saxena, Director, Department for Mental Health and Substance Abuse, WHO, Dr Robert Jakob, Team Lead, Classifications, Terminologies and Standards, WHO

UK Parliamentary Questions

In February and March, the Countess of Mar tabled Written Questions in the House of Lords seeking clarifications from the World Health Organization (WHO) around ICD Revision’s proposals for the ICD-10 “legacy” terms, postviral fatigue syndrome,benign myalgic encephalomyelitis and chronic fatigue syndrome for ICD-11.

Both responses were as clear as mud and both refer to “chronic fatigue” – a term that exists neither in ICD-10 nor in ICD-11, and a term for which no proposal had been submitted.

Australian Senate also seeks clarifications

On March 29, Senator Griff (South Australian Senate) requested clarifications around the release date for ICD Revision’s proposals for the classification of the G93.3 legacy terms and the deadline for receipt of stakeholder comments.

A response was provided via the Minister of Health on April 28. These questions and responses will be recorded in the Australian Hansard.

In the context of the Australian Health Minister’s answers, please note the following and also the Notes beneath the copy of the Minister’s response:

1. When the G93.3 legacy terms were restored to the Beta draft on March 26 they were restored with this caveat:

While the optimal place in the classification is still being identified, the entity has been put back to its original place in ICD.Team WHO 2017-Mar-26 – 12:46 UTC​

2. From the Beta draft Proposal Mechanism (for which registration is required):

Deadline Information for proposals:

Deadline in order to be considered for the final version is 30 March 2017

Comments by Member States and improvements arising as a part of the Quality Assurance mechanism will be included with deadlines later in 2017

3. In this November 2016 slide presentation by WHO’s, Dr Robert Jakob, the deadlines for Member State comments and improvements arising as part of the Quality Assurance mechanism were given as:

4. However, no public information has been available for the deadline for receipt of stakeholder comments in respect of proposals that met the March 30 deadline for consideration for inclusion in the final (2018) version.

Australian Senate Question and Response

SENATE QUESTION
QUESTION NUMBER: 435

DATE ASKED: 29 March 2017
DATE DUE TABLING: 28 April 2017

SENATOR Griff, asked the Minister representing the Minister for Health and Aged Care, upon notice, on 29 March 2017:

With reference to the World Health Organization (WHO) which is currently working on the latest edition of the International Classification of Diseases (ICD-11), and the Australian Collaborating Centre under the auspices of the Australian Institute of Health and Welfare which is coordinating Australia’s part in the latest edition:

1. Can the Minister request that the Joint Task Force responsible for steering the finalisation of the next edition of the WHO International Classification of Diseases to confirm the date by which the Topic Advisory Group for Neurology will release its proposals for the classification of the ICD-10 G93.3 legacy categories: post viral fatigue syndrome, benign myalgic encephalomyelitis and chronic fatigue syndrome, for public scrutiny and comment.

2. Can the Minister confirm the date by which comments on their proposals will be required to be submitted for the consideration of the Joint Task Force.

3. Can the Minister detail what the Australian Government is doing in terms of research into and treatment for post viral fatigue syndrome, benign myalgic encephalomyelitis and chronic fatigue syndrome.

SENATOR NASH – The Minister for Health has provided the following answer to the Honourable Senator’s question:

1. The World Health Organization (WHO) has released its classification of the International Classification of Diseases (ICD)-10 code G93.3 legacy categories (post viral fatigue syndrome, benign myalgic encephalomyelitis and chronic fatigue syndrome) in ICD-11; they are classified in the same way as they were in ICD-10*. This classification is visible in the draft of the ICD-11 that is available for comment on the WHO’s ICD-11 website. WHO has advised that the final classification in the ICD-11 will be decided based on an extensive scientific review.

WHO has been managing the development of ICD-11 with the advice from advisory groups including the Topic Advisory Group for Neurology and the Joint Task Force. The Topic Advisory Group for Neurology ceased operations in October 2016.

2. WHO has advised that comments on ICD-11 can be provided by anyone at any time through the ICD-11 website. Whilst the deadline for such comments to be made for consideration by WHO in the finalisation of ICD-11 for its release in 2018 was 30 March 2017, comments can be made after that date for consideration for future updates of ICD-11.

3. The National Health and Medical Research Council (NHMRC) has provided $1.6 million of research funding towards myalgic encephalomyelitis, chronic fatigue syndrome and other related fatigue states (ME/CFS) collectively since 1999.

NHMRC has created an online pathway for community and professional groups to propose ideas for health research topics and questions, which NHMRC may develop into a targeted call for research to invite grant applications. A targeted call for research is a one-time request for grant applications to advance research in a particular area of health and medicine that will benefit Australians. A submission on ME/CFS had been received through this pathway and is under consideration.

NHMRC staff are also in communication with the ME/CFS Action Group to discuss ways evidence based diagnostic and treatment advice can be adapted and applied in Australian clinical practice.​

*Ed: The statement: “…[the terms] are classified in the same way as they were in ICD-10.” is not entirely correct. In ICD-10, chronic fatigue syndrome is not included in the Tabular List. It is listed in the Index, only, and points coders and clinicians to the G93.3 code. In the ICD-11 Beta listing for these terms, as restored (with a caveat) on March 26, both benign myalgic encephalomyelitis and chronic fatigue syndrome are specified as Inclusion terms to Postviral fatigue syndrome in both the ICD-11 Foundation and MMS Linearization (the ICD-11 equivalent of the Tabular List).

Notes:

This Australian Senate Response would appear to clarify the following:

a) that despite nearly 10 years in development and with ICD-11 MMS due to be finalized by the end of this year, ICD Revision has still not reached consensus over the proposed classification of these three ICD-10 terms.

b) that the terms’ current placement and hierarchy in the ICD-11 Beta (as restored to the draft on March 26) may change between now and the end of this year or between now and the first scheduled annual maintenance and update revision (which would be expected in 2019, if ICD-11 is released in 2018).

If consensus were to be reached before the end of 2017, the Response does not clarify whether revised proposals would be entered into the Proposal Mechanism for public scrutiny and comment (or for how long) or would by-pass the Proposal Mechanism and be entered directly into the Beta draft as “Approved” and “Implemented” for incorporation into the final (2018) draft.

Or, having missed the March 30 deadline for consideration for inclusion in the initial 2018 release, whether any revised proposals released before the end of 2017 would need to be carried forward for consideration for inclusion in the first annual update in 2019, and if so, whether there would be any opportunity, at that stage, for stakeholder review and comment.

c) The response clarifies that the Topic Advisory Group for Neurology ceased operations in October 2016. Although it was understood that at some point the various Topic Advisory Groups would cease operating, the fact that TAG Neurology was no longer active was not communicated by Dr Robert Jakob or by the Joint Task Force to those of us attempting to obtain crucial information about proposals and deadlines via communications which, in some instances, the Chair of TAG Neurology (Dr Raad Shakir) was being copied into.

Two new ICD-11 advisory committees are expected to take over from the Joint Task Force:

Classification and Statistics Advisory Committee (CSAC) To perform as principal ICD-11 advisory committee, focusing mainly on ICD-11 MMS and its update proposals in mortality and morbidity

Medical and Scientific Advisory Committee (MSAC) To advise on scientific content for the ICD-11, of which advice is to be provided to CSAC

These advisory committees will be involved in the annual maintenance and update framework for ICD-11, once it has been released.

The Medical Scientific Advisory Committee (MSAC) was launched at the ICD-11 Revision Conference in 2016 and is expected to comprise approximately 6-10 experts selected by WHO. Dr Christopher Chute, who had chaired the ICD Revision Steering Group from 2010-2016, is a Co-Chair for the MSAC. Membership lists for MSAC and CSAC are not currently available and these new committees may still be in the process of being assembled.

It is possible that MASC and CSAC may be involved in final decisions about these terms, especially if consensus is not reached before the end of 2017.

Four day commenting window

The three terms were restored to the Beta draft on Sunday, March 26, when my long-standing proposals for exclusions under “Fatigue” were also partially approved and implemented, together with a somewhat opaque caveat posted by a Beta admin that prompted me to request clarification from Dr Jakob for its meaning.

Dr Jakob confirmed that the three terms had been restored to the Beta draft on March 26. But the restoration of the terms under parent, Other disorders of the nervous system was not viewable in the public version of the Beta until midday on Monday, March 27, because the public version of the platform had not been updated over the weekend and neither had the Print Versions or the Print Version of the Index.

This meant that having finally been restored to the draft, after a four year absence, the terms were viewable and open for comment by stakeholders for barely 4 days before the March 30 proposal and comment deadline was reached.

This also implies that several hundred stakeholder comments submitted after March 30 in response to the proposal submitted by myself and Mary Dimmock may have been submitted too late to be considered in the context of proposals that had met the March 30 deadline (which ours did) and may potentially be rolled forward for future consideration.

In February, I had asked Dr Robert Jakob and the Co-Chairs of the Joint Task Force three or four times if they would clarify by what date comments on proposals that met the March 30 deadline would need to be submitted – information that was vital for all public stakeholders planning to submit comment on Beta draft proposals – but these requests for clarification were sidestepped by both Dr Jakob and the Joint Task Force.

Stakeholders and stakeholder organizations should not be discouraged from submitting comments if they have not already done so.

The handling of these terms by ICD Revision (which included a four year period during which stakeholders were disenfranchised from the revision process – unable to scrutinize and comment on proposals because the terms had been inexplicably removed from the draft) and the cavalier and frequently obfuscatory manner in which stakeholder enquiries have been fielded, reflects very poorly on the WHO’s vision of an “open and transparent” revision process that is “inclusive of stakeholder participation” and on the WHO, in general.

A version of ICD-11 in 2018

The World Health Organization (WHO) has been revising ICD-10 since 2007.

After several shifts in the timeline, WHO plans to present a version of the next edition (ICD-11 MMS) at the World Health Assembly (WHA), in May 2018.

WHO won’t be seeking endorsement of the ICD-11 product in May 2018 because it won’t be ready to implement. Endorsement will be sought at some point in the future. In the meantime, a version of ICD-11 is scheduled for release later in 2018, after the May assembly. The release date has yet to be announced.

“…The World Health Organization (WHO) is currently developing the 11th revision of ICD. Once endorsed by the World Health Assembly (WHA), WHO Nomenclature regulations stipulate that Member States must use the most current revision for mortality and morbidity purposes. For this reason and to allow member countries to adopt the new revision when they are ready, WHO will brief the WHA on ICD-11 in May 2018 but will not seek endorsement at this time.”

Member states will transition from ICD-10 to the new edition at their own pace. It’s going to be several years before countries have evaluated the ICD-11 product for utility and prepared their health systems to make the transition.

At some point, data using codes from the new edition will be accepted alongside data compiled using ICD-10. WHO will continue to support ICD-10 until the majority of member states have adopted and implemented the new edition.

It will take even longer for countries like the U.S. and Canada, who use a country specific adaptation of ICD, to implement as they will need to modify the new edition to suit their countries’ health systems. The earliest Canada can implement is currently projected as 2023 [1]. The U.S.’s CDC estimate it will take at least 6 years after the codes have been ratified to prepare, field test and implement an ICD-11-CM/PCS.

Proposal deadlines

Some important deadlines for proposals for the ICD-11 Beta draft:

The deadline in order for proposals to be considered for a frozen version in March/April 2017 was 30 December 2016.

In order for proposals to be considered for inclusion in the version of ICD-11 that is scheduled for release in 2018, they needed to be submitted by March 30, 2017. So those two deadlines have been reached.

Comments by member states and improvements arising as a part of the Quality Assurance mechanism will be included with deadlines later in 2017.

According to Slide #12 in this November 2016 WHO presentation, the deadline for member state comments is May 31, 2017; the deadline for Field Testing and Quality Assurance is June 30, 2017 [2]. But these dates are unconfirmed and may have been revised since November, last year.

Proposals received after the end of May will be considered in the context of ICD-11 maintenance after 2018, when the new version will be subject to an annual update and maintenance schedule [3]. The first annual update is anticipated in 2019.

The Joint Task Force is considering naming each year’s iteration in the format: ICD 2018; ICD 2019; ICD 2020 and so on. There may never be a need for an ICD-12, since an electronic system is better able to evolve “gracefully” – as Dr Christopher Chute (Joint Task Force; Chair, Revision Steering Group) puts it – in response to advances in scientific knowledge and classificatory changes.

Deadlines for submitting comments

I have asked Dr Jakob and the Joint Task Force to clarify by what date comments on proposals that met the March 30 deadline will need to be submitted by in order to be considered in the context of the earliest release of ICD-11, in 2018.

No clarification has been forthcoming; so if you are a stakeholder considering submitting a comment on existing proposals in the Beta draft or on outstanding proposals queued in the “Proposals Mechanism” which are still going through the review process, then I would advise that you put this in hand over the next couple of weeks. If any deadline is announced, I will update at the top of this report.

Frozen release

On April 4, ICD Revision is scheduled to release a frozen version of ICD-11 MMS for field testing*. If there are any changes in this April 2017 Frozen Release that are relevant to stakeholders in the G93.3 terms, I will post an update at the top of this report.

Current status of the ICD-10 G93.3 legacy categories

The ICD-10 G93.3 legacy categories: Postviral fatigue syndrome; Benign myalgic encephalomyelitis and Chronic fatigue syndrome were taken out of the public version of the Beta draft in early 2013, with no explanation for their absence.

ICD Revision has maintained a cephalopodic grip on its intentions for these terms.

Advocates and patient organization stakeholders have been attempting to obtain transparency from ICD Revision around the Topic Advisory Group for Neurology’s proposals for these terms for over four years. During this period, stakeholders have been disenfranchised from participation in the revision process.

Questions raised in the English Parliament

15 international stakeholder organizations wrote to the ICD-11 MMS Joint Task Force, in February, in support of my call that the Joint Task Force place the matter of the continued absence of proposals for these terms on the Agenda of their February 20–22 meeting, in Cologne.

There were asked to expedite the release of proposals for public scrutiny and comment before the March 30 deadline.

This initiative was met with a disturbing level of obfuscation on the part of WHO and the Joint Task Force, especially given that ICD Revision has been promoted as an open, transparent process, inclusive of stakeholder participation.

The Countess of Mar, a long standing advocate for patients with ME and CFS, tabled two Written Questions in the House of Lords. The first is here (February 27), which received a response that raised more questions than it answered and a follow up question, here (March 16), which received an equally opaque reply.

But on March 26, the three terms were finally restored to the Beta draft – but with this caveat:

“While the optimal place in the classification is still being identified, the entity has been put back to its original place in ICD.”

Team WHO2017-Mar-26 – 12:46 UTC

This suggests that we should view the restoration of the terms as a “placeholder” and that the work group may release revised proposals later this year.

What do we know?

WHO has confirmed that there is no intention to classify the ICD-10 G93.3 legacy terms under the Mental or behavioural disorders chapter or under the Symptoms, signs chapter.

“Team WHO” has also approved some long standing proposals for exclusions for two of these terms under Fatigue (but not yet approved an exclusion for Postviral fatigue syndrome and I have asked “Team WHO” for the rationale for this apparent anomaly, since one would anticipate that if the inclusion terms are excluded under Fatigue, the ICD concept title entity would also be excluded). Possibly, TAG Neurology has other plans for the classification of PVFS in ICD-11.

So, nearly 10 years into the revision process, it’s still unclear what the work group might be considering for these terms, when they will reach consensus, or whether alternative proposals might be released on April 4, when a frozen version of ICD-11 is scheduled for release for field testing.

How do the terms currently stand in ICD-10?

This is how the G93.3 legacy terms were represented in ICD-10:

For ICD-10, Postviral fatigue syndrome (PVFS) is the lead (or concept title) term. Benign myalgic encephalomyelitis is the inclusion term under PVFS and takes the G93.3 code. Chronic fatigue syndrome is listed only in the Index, and coded to G93.3.

How do the terms stand in ICD-11 Beta draft, now they have been restored?

Since March 26, 2017, for ICD-11 Beta draft, all three terms are currently back under the Neurology chapter, under parent: Other disorders of the nervous system. PVFS is the lead (or concept title) term. BME and CFS are both specified as inclusion terms to PVFS, in the ICD-11 equivalent of the Tabular List. The terms listed under synonyms and all other “Content Model” descriptive content appear much as the Beta had stood in 2009.

But given the caveat, it is still unknown what the work group might be considering for these terms or whether or when they might release further proposals.

Note that the recommendations of the various external work groups are advisory only. WHO classification experts and the Joint Task Joint can, and sometimes do, overrule work group decisions.

If the Topic Advisory Group for Neurology, that has responsibility for these terms, were to reach consensus and release an alternative set of proposals before 2018, these will not necessarily obtain the approval of WHO/Joint Task Joint.

Suzy Chapman and Mary Dimmock have submitted a proposal

To address this situation, U.S. advocate, Mary Dimmock, and I have collaborated on the preparation of a formal and fully referenced proposal which we submitted on March 27. Our proposal (in the PDF below) recommends that these terms should be retained in the neurological chapter, using separate codes for ME and CFS, and also makes other recommendations.

Rationale for Proposal forDeletion of the Entity: Bodily distress disorder

1: The acronym “BDD” is already in use to indicate Body Dysmorphic Disorder [1].

2: With limited field studies, there is currently no substantial body of evidence for the validity, reliability, utility, prevalence, safety and acceptability of the S3DWG’s proposed disorder construct. However, the focus of this rationale is the proposed nomenclature.

The Somatic Distress and Dissociative Disorders Working Group (S3DWG) proposes to name its construct, “bodily distress disorder (BDD)” – a term that is already used by researchers and in the field interchangeably with the disorder term, “bodily distress syndrome (BDS).”

“Bodily distress syndrome” is a conceptually divergent disorder construct: differently defined and characterized, with different criteria that are already operationalized in Denmark and beyond, in research and clinical settings, and which potentially include a different patient set to that described in the S3DWG’s proposal [2].

It is noted that “Somatic symptom disorder” is listed under Synonyms for the BDD entry in the ICD-11 Beta draft.

The defining feature of both the S3DWG’s “bodily distress disorder” and DSM-5 “somatic symptom disorder” is the removal of the distinction between “medically explained” and “medically unexplained” somatic complaints. Rather than define the disorder on the basis of the absence of a known medical cause, instead, specific psychological features are required in order to fulfill the criteria.

The S3DWG’s BDD is characterized by “the presence of bodily symptoms that are distressing to the individual and excessive attention directed toward the symptoms which may be manifest by repeated contact with health care providers.”

“Excessive attention is not alleviated by appropriate clinical examination and investigations and appropriate reassurance.”

“If a medical condition is causing or contributing to the symptoms, the degree of attention is clearly excessive in relation to its nature and progression.”

“Bodily symptoms and associated distress are persistent, being present on most days for at least several months and are associated with significant impairment in personal, family, social, educational, occupational or other important areas of functioning.”

The S3DWG’s “bodily distress disorder” may involve a single unspecified somatic symptom or multiple unspecified symptoms that may vary over time, in association with the disorder’s other defining features.

For DSM-5 “somatic symptom disorder,” the centrality of medically unexplained symptoms in order to meet the criteria is similarly de-emphasized and replaced by psychological responses to distressing, persistent symptoms: “excessive thoughts, behaviours and feelings” or “excessive preoccupation” with the bodily symptom or associated health concerns [5].

As with BDD, for SSD, the symptoms may or may not be associated with another medical condition. Some patients with general medical diagnoses, such as cancer, cardiovascular disease or diabetes, or patients diagnosed with the so-called “functional somatic syndromes” may qualify for a diagnosis of SSD if they are perceived as experiencing disproportionate and excessive thoughts and feelings or using maladaptive coping strategies in response to their illness, despite the reassurance of their clinicians [6].

As with the S3DWG’s defining of BDD, for SSD, there is no requirement for a specific number of complaints from among specified symptom groups to meet the criteria: so no symptoms counts or symptom clusters from body systems required for either.

To meet the SSD criteria: at least one symptom of at least six months duration and at least one of three psychological criteria are required: disproportionate thoughts about the seriousness of the symptom(s); or a high level of health anxiety; or devoting excessive time and energy to symptoms or health concerns; and for the symptoms to be significantly distressing or disruptive to daily life.

Though they differ somewhat in the characterization of their severity specifiers, the S3DWG’s defining of BDD and DSM-5 SSD may be considered essentially similar in conceptualization: no distinction between “medically explained” and “medically unexplained”; a much simplified criteria set to those defining the somatoform disorders, based on “excessive” or “disproportionate” psychological responses to persistent distressing symptoms, and with significant impairment or disruption to functioning.

Whereas, for the Fink et al. (2010) “bodily distress syndrome (BDS),” psychological or behavioural characteristics are not part of the criteria: symptom patterns or clusters from organ/body systems (cardiopulmonary; gastrointestinal; musculoskeletal or general symptoms) are central [2]. The diagnosis is exclusively made on the basis of the somatic symptoms, their complexity and duration, with moderate to severe impairment of daily life. There is a “Moderate: single organ” type and a “Severe: multi-organ” type.

The Fink et al. (2010) BDS construct is considered by its authors to have the ability to capture the somatoform disorders, neurasthenia, “functional symptoms” and the so-called “functional somatic syndromes” under a single, unifying disorder construct which subsumes CFS, ME, fibromyalgia and IBS (which are discretely classified within other chapters of ICD-10), noncardiac chest pain, chronic pain disorder, MCS and some others [7][8][9].

(The various so-called specialty “functional somatic syndromes” are considered by the authors to be an artifact of medical specialization and manifestations of a similar, underlying disorder with a common, hypothesized aetiology.)

Contrast this with the S3DWG’s BDD construct, which makes no assumptions about aetiology and does not exclude symptoms associated with general medical conditions; whereas, for Fink et al. BDS, “If the symptoms are better explained by another disease, they cannot be labelled BDS.”

That DSM-5 SSD and Fink et al. (2010) BDS are differently conceptualized, with different criteria sets, potentially capturing different patient populations has been acknowledged by SSD work group chair, Joel E Dimsdale, and by Fink, Henningsen and Creed [10][11]. In the literature, however, one observes frequent instances where the term “bodily distress disorder” has been used when what is actually being discussed within the paper or editorial is the Fink et al. (2010) “bodily distress syndrome (BDS)” disorder construct.

For example, “bodily distress disorder” is used interchangeably with “bodily distress syndrome” in the editorial (Creed et al. 2010): Is there a better term than “medically unexplained symptoms”? [1].

This recent paper: Medium- and long-term prognostic validity of competing classification proposals for the former somatoform disorders (Schumacher et al. 2017) compares prognostic validity of DSM-5 “somatic symptom disorder (SSD)” with “bodily distress disorder (BDD)” and “polysymptomatic distress disorder (PSDD)” and discusses their potential as alternatives to SSD for the replacement of the somatoform disorders for the forthcoming ICD-11 [14].

The authors state, “the current draft of the WHO group is based on the BDD proposal.” But the authors have confirmed that for their study, they had operationalized “Bodily distress disorder based on Fink et al. 2007” [15].

In the (Fink et al. 2007) paper: Symptoms and syndromes of bodily distress: an exploratory study of 978 internal medical, neurological, and primary care patients, the authors conclude: “We identified a general, distinct, bodily distress syndrome or disorder that seems to encompass the various functional syndromes advanced by different medical specialties as well as somatization disorder and related diagnoses of the psychiatric classification.”

There are other examples in the literature and in the field. But these suffice to demonstrate that the term, “bodily distress disorder” is already used synonymously with disorder term “bodily distress syndrome (BDS)” and that researchers/clinicians, including Fink et al., do not differentiate between the two.

If researchers/clinicians do not differentiate between “bodily distress syndrome” and “bodily distress disorder” (and in some cases, one observes the conflations, “bodily distress syndrome or disorder” and “bodily distress syndrome/disorder”), has the S3DWG considered the difficulties and implications for maintaining the discrete identity of its proposed disorder, once ICD-11 is in the hands of its end users – clinicians, allied health professionals and coders; or considered the implications for patients and the particular vulnerability of those diagnosed with one of the so-called, “functional somatic syndromes”; or the implications for data reporting and analysis?

The S3DWG presented its emerging proposals for subsuming most of the ICD-10 somatoform disorder categories between F45.0 – F45.9, and F48.0 Neurasthenia, under a new single category which it proposes to call “bodily distress disorder (BDD)” in 2012 [3] and again in 2016 [4].

Thus far, the S3DWG has published no rationale for its recommendation to repurpose a disorder term already strongly associated with the Fink et al. (2010) disorder construct.

Neither has the group discussed nor acknowledged within its papers the implications for confusion and conflation between its own SSD- like “BDD” construct and the Fink et al. “bodily distress syndrome (BDS).”

Nor has the group’s output discussed the potential difficulties and implications for maintaining construct integrity within and beyond ICD-11.

There is no justification for introducing a new disorder category into ICD-11 that has greater conceptual alignment with the DSM-5 SSD construct but is proposed to be assigned a disorder name that is closely associated with a divergent (and operationalized) construct/criteria set, that is already in use in research and clinical settings.

This is unsafe and unsound classificatory practice.

This proposed disorder name should be rejected by the Project Lead for the revision of the Mental or behavioural disorders chapter and by the Joint Task Force that is overseeing the finalization of ICD-11 MMS.

If the S3DWG is unprepared or unwilling to reconsider and recommend an alternative disorder name then I submit that the current proposal to replace the somatoform disorders with a single “bodily distress disorder” category should be abandoned.

ICD-11 should proceed with the ICD-10 status quo, or retire or deprecate the somatoform disorder categories for the next edition.

It is perhaps germane that in 2010, three years prior to the finalization of DSM-5, Creed et al. had advanced: “Somatic symptom disorder is not a term that is likely to be embraced enthusiastically by doctors or patients; it has an uncertain core concept, dubious wide acceptability across cultures and does not promote multidisciplinary treatment. In our discussion, the terms which fit most closely the criteria we have set out above were the following: bodily distress (or stress) syndrome/ disorder, psychosomatic or psychophysical disorder, functional (somatic) syndrome or disorder.” [1]

The authors conclude that “bodily distress disorder” best fitted their “Criteria to judge the value of alternative terms for ‘medically unexplained symptoms.'”

It would appear that the term “bodily distress disorder” can mean anything anyone chooses it to mean – which might be admissible for Humpty Dumpty but unsound classificatory practice for ICD-11 [16].

Read Codes (a coded thesaurus of clinical terms for recording patient findings and procedures in health and social care IT systems across primary and secondary care, e.g. GP surgeries and reporting of pathology results).

The National Information Board (NIB) has specified that all primary care systems adopt SNOMED CT by the end of December 2016 and that SNOMED CT is to be used as the single terminology in all health care settings in England, with a projected adoption date for the entire health system of April 2020 [3].

This is an online browser and does not require any software to be downloaded. You will need to accept the license and then select for the UK “Local Extension” of SNOMED CT. Click on the “Search” tab to enter clinical terms.

The SNOMED CT International Edition and “Local Extensions” for a number of other countries, including the US, are also available via the browser. All editions release new updates twice a year, on a staggered schedule. The Release schedule for the UK Extension is April and October.

Read Codes system to be retired

The Read Codes system of clinical terms has been used in the NHS since 1985. As part of the adoption of SNOMED CT in primary care, Clinical Terms Version 3 (CTV3) is being deprecated.

Postviral fatigue syndrome was listed under Children to Chronic fatigue syndrome.

Read Codes (CTV3)

The twice yearly Read Codes releases (April and October) are available only to license holders but the codes can be viewed through this public resource (caveat: it is unclear how often this NCBO BioPortal ontology resource is updated with new releases for individual ontology systems):

Correspondence between Countess of Mar and UK Health and Social Care Information Centre

Forward-ME is an informal group for ME charities and voluntary organizations, chaired by the Countess of Mar, who also serves as Co-chair to the All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME).

Between November 2014 and June 2015, Lady Mar was in correspondence with Mr Leon Liburd, Senior Support Analyst Systems and Service Delivery, and Ms Elaine Wooler, Advanced Clinical Terminology Specialist, UK Health and Social Care Information Centre.

Changes to SNOMED CT

As a result of these exchanges, Lady Mar was advised that the relationship between the entry for 52702003Chronic fatigue syndrome and the Mental disorder parent had been retired. In future editions, Chronic fatigue syndrome would be listed under the single parent, 281867008 Multisystem disorder.

Additionally, 51771007 Postviral fatigue syndrome was being removed as a subtype of 52702003 Chronic fatigue syndrome (disorder) – though no rationale for this specific decision appears to be provided within the correspondence.

[So 51771007 Postviral fatigue syndrome would be no longer be listed as a sub class under Children to 52702003 Chronic fatigue syndrome but directly under two parents: 281867008 Multisystem disorder and 123948009 Post-viral disorder.]

These changes were effected in the July 2015 release for the International Edition (Release 20150731).

They were subsequently incorporated into the September 2015 US Extension (Release 20150901), the October 2015 UK Extension (Release 20151001) and the November 2015 Swedish Extension (Release 20151130). It is expected that other country Extensions will also reflect these changes in their forthcoming releases.

Within the correspondence, on 11 November 2014, Mr Leon Liburd had also advised Lady Mar:

“It is also noted that the corresponding representation in the UK’s Clinical Terms Version 3 terminology product Xa01F | Chronic fatigue syndrome is classified as both a Neurological disorder and a Mental health disorder. As such, any conclusions emerging from the SNOMED CT discussions would also be reflected in the CTV3 UK product.”

Clarification re CFS and CTV3

In November, I contacted the UK Health and Social Care Information Centre for clarification of how CFS and its various Synonyms are currently listed within CTV3.

“[Xa01F | Chronic fatigue syndrome was being moved] under a single supertype 281867008 | Multisystem disorder (disorder) as to reflect the SNOMED correction in CTV3″

and that this change should be reflected in the April 2016 CTV3 release.

As noted above, Clinical Terms Version 3 (CTV3) is being deprecated and the last release of CTV3 will be published in April 2018.

The ICD-11 Beta draft and proposed classification of the G93.3 legacy terms

In June, WHO’s Dr Robert Jakob had told me that if TAG Neurology’s proposals and rationales for the G93.3 legacy terms were not ready for public release in September, he projected their release by December, latest (see towards end of Post #324).

No proposals were released in September and none in December. Eight years into the revision process and stakeholders still don’t know how ICD Revision proposes to classify the ICD-10 G93.3 legacy terms for ICD-11.

On 28 December, I called again, via the ICD-11 Beta Comments mechanism, for these terms to be restored to the public version of the Beta drafting platform.